Tag Archive for: Parkinson's Disease

7 tips for navigating holidays with a loved one who has dementia

The holidays are upon us, and whether your loved one is experiencing cognitive impairment due to Alzheimer’s disease, Parkinson’s disease, stroke, or any other cause, special planning and considering key changes to family traditions can help make the season more enjoyable for everyone. 

Amelia Anderson-Mooney, clinical neuropsychologist with private practice in Glasgow, Kentucky, and assistant professor of neurology and graduate medical education for the University of Kentucky College of Medicine, said a few small tweaks to annual rituals can go a long way toward making everyone more comfortable.

“Adjusting holiday plans appropriately often begins with a good understanding of what disease stage our loved one is experiencing now,” she said. “If symptoms are mild, small adjustments can make a world of difference.  If symptoms are moderate to severe, it’s likely that we will need to make more substantial changes. In mild stages, many elders with cognitive decline may be able to have a more active role in planning and preparing for family activities. In more advanced stages, their role will very likely be smaller but no less valuable.”

Here are seven tips for making the holiday season more comfortable for your loved one with dementia and everyone else.

Tip 1: Ask and learn

Sometimes we haven’t been fully aware of what our loved ones have been doing behind the scenes of our traditional holiday gatherings. When a loved one receives a diagnosis of dementia, it’s up to us to educate ourselves about the full extent of the responsibilities they have taken on over the years, and then have an open, direct discussion about what that loved one feels comfortable doing for this year’s holiday celebrations.

Anderson-Mooney said it’s important to make sure your loved one with dementia is involved in holiday preparation in a way that is meaningful to them. She said sometimes this can be accomplished by asking, simply, “What can we do to make the holidays easier for you?” Anderson-Mooney added that it’s critical to have this conversation with the understanding that elders with cognitive change may need additional time to gather their thoughts and respond.

“It is also important to remember some elders with cognitive change may not fully understand their limitations, which means a more substantial change in approach for us,” said Anderson-Mooney, who is a National Academy of Neuropsychology (NAN) board member and chair of NAN’s publications committee.

Tip 2: Delegate, delegate, delegate

If the person in your family with dementia is the person who has hosted holiday traditions, it might be necessary to rethink the entire celebration. Perhaps your loved one no longer feels able to prepare their home in a way that makes them feel ready. Perhaps they feel they can do it, but they need help. Anderson-Mooney said it’s always a good idea to offer to help make a list and gather volunteers to pitch in.

She added: If your loved one with dementia no longer feels comfortable handling the family meal solo, delegating tasks could be a golden opportunity to learn family recipes and traditions straight from the source so they can be passed down to future generations. 

Tip 3: Keep tabs on overload

Anderson-Mooney noted that it’s also important to consider how much holiday cheer loved ones can handle at one time.

People with cognitive change often talk about how overwhelming it is to be in large groups of people, even people they love, because they feel like they can’t follow the conversations well.  Because of this, they tend to withdraw, and that withdrawal can be hard for other family members to understand. If you have noticed your loved one having difficulty interacting in family gatherings during the year, your family may want to plan to have smaller gatherings more often. 

Her advice: Make sure you build the day around what your loved one’s body needs  Plan activities at a time of day when your loved one feels the sharpest and most energetic. Do your shopping outings before lunch. If your loved one feels and operates best in the morning hours, maybe a Thanksgiving breakfast is in order, with smaller visiting groups later in the day.

“The holidays are about being together,” Anderson-Mooney said. “That’s what matters most.”

Tip 4: Make travel easier

Cognitive decline often adds a layer of complexity if your family has traditionally traveled for the holidays. People with cognitive impairment often lean heavily on their daily routine to help them get by from day to day. Travel, by its nature, can disrupt that routine completely.

Anderson-Mooney said this means that travel might be out of the question for some people with cognitive impairment. She added that if a loved one has had trouble adjusting to relatively small changes in their daily routine at home, you can anticipate that they may not adjust well to the larger demands of traveling.

In extreme cases, or cases where a loved one is experiencing significant cognitive decline, it may be wisest to eliminate travel of any kind.

Tip 5: Build in time to rest

Sleep disruption can be very problematic for people with dementia. Anderson-Mooney said in practice, she often sees an increase in confusion and emotional upset from disrupted sleep. Again, if you have seen your loved one struggle to adjust to an earlier wake up time for a doctor’s appointment, or struggle to adjust to time changes or new time zones, for example, unusual holiday schedules or on quick trips can be doubly hard. 

Consider also that traveling itself—whether it’s a one-hour car trip or a six-hour plane flight—can be exhausting.

Most people are familiar with the fatigue we feel after reaching our destination when we travel, even though we’ve just been sitting in a car all day or waiting for a plane. This fatigue happens, at least in part, because our brains are very busy processing all the novel scenery, keeping us safe in traffic, making sure we make our flight connections, helping us remember where we put our carry on bags, and so on. Anderson-Mooney said this fatigue can multiply in a serious way in people with cognitive impairment.

“If travel is in the plans for your loved one with cognitive impairment, consider breaking up the trip into smaller legs or adding a day before and/or after to allow your loved one to recover energy-wise,” she said.

Tip 6: Line up support

If you’re planning to travel for the holidays by car, be very realistic about whether your loved one can handle any of the driving. If you’re flying, airlines help vulnerable elders just as they do for unaccompanied minors. Most of this assistance is available in part because of the federal Air Carrier Access Act and the Americans with Disabilities Act. Airlines are required to offer assistance for seniors such as help in boarding and making connecting flights, and many airlines go above and beyond the basic requirements to ensure that their elderly passengers are well cared for in their travels. (This, this, and this are great websites for more information on the subject.)

Anderson-Mooney suggested that family members may want to consider adding an extra layer of support for loved ones with dementia.

Specifically, she advised that someone in the family (or a hired caregiver) accompany your loved one as the person’s personal “travel coordinator.” This person becomes responsible for carrying your loved one’s medications, keeping track of their valuables, and tracking the itinerary. The person also can be responsible for making sure that your loved one takes their medications on time while traveling and while on the ground at the destination. (Setting alarm reminders on the coordinator’s phone is a helpful way to make sure your loved one never misses a dose.)

Anderson-Mooney said the coordinator should travel with a full, printed list of medications, dose amounts, and dosage times, as well as names and phone numbers of your loved one’s doctors. She added that it’s important to keep the list and the medication in a carry-on bag so it’s not lost and separated from your loved one.

“It’s so important to consciously and deliberately appoint someone to ensure these things are done,” Anderson-Mooney said. “With some medications, missing doses can be dangerous. Replacing medications in lost baggage can be done, but it’s better to avoid the hassle in the first place.”

Tip 7: Providing physical care

Finally, Anderson-Mooney said it’s important to be mindful to maintain our loved ones’ physical needs in the hustle and bustle of the holidays.

Make sure your loved one is eating good quality food on a regular schedule. Make sure they stay hydrated while out and about in town and during busy family gatherings. Be very careful and limited with alcohol consumption. Deliberately add in more time for rest and recovery in your schedule. Set medication alarms to make sure we remember to take medicines during our activities (taking water with us is often necessary for this).

Again, it can be very helpful to have a dedicated person or group of people to watch over these needs for your loved one. If this is too big of a job for one person, designate a different coordinator for each day of the holiday, and switch throughout the celebration. 

Closing thoughts

Of course, all these suggestions assume that your loved one is going to be an active, agreeable participant in adjusting to their own needs. Unfortunately, sometimes this is just not the case.

“Cognitive change is cruel and unforgiving, and it can completely change our loved ones’ personalities and ways of doing things,” Anderson-Mooney said. “Our loved ones may no longer be capable of understanding their own changes and adapting to their own needs. Our loved ones may no longer recognize us when we visit.  We might deal with more agitation and anger, more upset, lashing out behavior. In these cases, our traditional plans just don’t make sense anymore.”

In these worse-case scenarios, Anderson-Mooney said we must adapt to a much heavier degree.

Specifically, if visits usually leave your loved one agitated and upset, it may be best to delay the holiday all together.

If visits leave your loved one confused, it may still be worth making the effort to celebrate together. Anderson-Mooney added that even if your loved one no longer recognizes you, they are very likely to recognize and understand that you are someone who loves and cares about them. They will appreciate your gesture of time and company, small gifts and comforts, favorite foods, and chatting about family photos. Spend time listening to their favorite music. Talk about their favorite memories from the past. Take the time to write down the family stories they tell before they fade away.

“This time can be a gift, even while you mourn the changes your family is experiencing,” Anderson-Mooney said.  “Give the best love and honor that you can, and know that it matters, whether or not your loved one can appreciate it.”

This essay has been factchecked by members of NAN’s Publications Committee. For more about that process, click here.

The truth about Parkinson’s Disease

Parkinson’s Disease is a brain disorder that causes unintended or uncontrollable movements, such as shaking, stiffness, and difficulty with balance and coordination. For the better part of the last 30 years, Dr. Alexander Troster has been studying this condition to learn more about what causes it, what happens when people have it, and what treatments seem to work best. Today Dr. Troster is professor of neuropsychology and chair of the Department of Neuropsychology at Barrow Neurological Institute at Dignity Health St. Joseph’s Hospital and Medical Center in Phoenix. His current investigations include the assessment, definition, and neural bases of mild cognitive impairment in Parkinson’s disease, and the evaluation and prediction of neurobehavioral outcomes of deep brain stimulation for a variety of neurological and psychiatric conditions. BrainWise Managing Editor Matt Villano recently sat down with Dr. Troster to learn more about his research and his perspective on Parkinson’s Disease. What follows is an edited transcript of their interview.

BrainWise: How is Parkinson’s Disease diagnosed?

Dr. Troster: There is no one diagnostic test for Parkinson’s Disease. One of the things that’s true of Parkinson’s Disease is that the symptoms with which this disease begins is quite variable. If we look at the most common forms, people either begin with having a tremor, which is probably about two thirds of all cases of Parkinson’s disease, and one third who tend to have more difficulty with walking, slowing and stiffness. What’s important to point out is that before Parkinson’s disease is even diagnosed, this is a disease with a long prodromal period. What that means is that the changes in the brain underlying Parkinson’s disease have been occurring for a long, long time. And the estimates are anywhere from 15 to as long as 30 years before diagnosis.

In general, people have difficulties with movement, they’re slower to move. They may shake, especially at rest. But it’s very hard in the individual case to draw a straight line and say, ‘This is going to be the progression, this is the symptom you’re going to have next.’ Symptoms declare themselves slowly, gradually, and with great variability.

One of the things that’s been noticed is that people with Parkinson’s Disease often have depression, even before they get diagnosed with Parkinson’s Disease. They also tend to have something known as REM sleep behavior disorder. During sleep, the muscles are usually paralyzed and then REM sleep behavior disorder, that paralysis doesn’t occur. When people have dreams, they start to act out their dreams, they talk in their sleep, they might start to thrash, they might start falling out of bed. And these are things that one wants to look for. These are all what we call prodromal things. And one of the things that people also have is a loss of smell, which is very common. When you ask people, they often have before the motor symptoms began a loss of smell many years before that.

BrainWise: Do we know what causes Parkinson’s Disease?

Dr. Troster: No, we don’t. I mean, we can talk about how people with Parkinson’s Disease get a misfold of protein that aggregates in the brain cells, then Lewy bodies and Lewy neurites form, but even with that explanation, you can keep on saying, ‘What causes this?’ The truth is that we don’t really know what causes the disease.

Parkinsonism is not the same as Parkinson’s disease. Parkinsonism is the core symptoms involving, for example, tremor, slowness, stiffness, imbalanced difficulties. But those can be produced by literally well over 100 conditions. And some of those are reversible and some are not. Some are just mimics of Parkinson’s disease. This can be frustrating for patients sometimes because they’ll go in and say, ‘I’ve got a tremor,’ and neurologists often are not going to give a diagnosis of Parkinson’s Disease until some of the other symptoms declare themselves and some of the other tests are done.

BrainWise: Is Parkinson’s Disease congenital?

Dr. Troster: If we think genetically, in terms of Mendelian genetics where either one or both parents have the condition, you’re going to get the condition potentially. There are genes associated with it. One is known as LRRK2, leucine-rich kinase repeating, a protein or what’s also called dardarin. And there’s a gene coating for alpha-synuclein, which is the core protein that accumulates and misfolds and forms Lewy bodies. And there’s two types of genes that are both autosomal dominant genes, meaning if one parent has that and you inherit that gene from that parent, that you’re going to get the disease.

What we don’t know at this point is whether there are minor mutations or polymorphisms either individually or in several forms and number can produce something like Parkinson’s Disease. It is likely that some genetic factors might predispose to environmental factors that can then trigger the disease as well. We know environmental factors like exposure to fertilizers, pesticides, well water, for example, can increase risk for Parkinson’s Disease.

BrainWise: What do people often get wrong about Parkinson’s Disease?

Dr. Alexander Troster: I think some of the misconceptions that people held maybe 10, 15 years ago are no longer the misconceptions they hold now generally. I think the biggest things are still a lack of realization that Parkinson’s disease is more than a movement disorder. Most people still think of it as it affects my movement. Some people mistakenly think it paralyzes them. So, I think over the past 10 years, more and more work has been done on the non-motor symptoms in Parkinson’s disease, and I think patients have become aware of non-motor symptoms as the disease has progressed.

Number two is that Parkinson’s is rapidly progressive. It’s much more [dependent on] when one develops the disease and the symptoms that impact the disease course. People with young onset Parkinson’s very often take a long time to progress. Several studies suggest that if you develop things like a dementia or global cognitive impairment, people with young onset Parkinson’s still develop it in their seventies, just like people tend to with regular onset Parkinson’s disease, for want of a better word. So, I’ve seen plenty of patients with Parkinson’s disease for 25 and 30 years.

I think the other misconception is that there’s little one can do. While it’s true that there’s no treatment or even a disease-modifying therapy at this point, a lot of the symptoms can be treated either pharmacologically or by ancillary therapies like speech therapy, physical therapy, occupational therapy. And more recently there’s been much more effort made at trying to study some methods of cognitive rehabilitation and remediation in patients with Parkinson’s disease.

BrainWise: To what extent do cases of Parkinson’s Disease incorporate dementia? Does the former always lead to the latter?

Dr. Troster: To my knowledge there’s only one good longitudinal study and that’s one from Australia, which I think followed people for up to 40 years. And obviously, that shows that pretty much 95 percent of people with Parkinson’s, if you survive that long, are going to develop a dementia. But of course, many people pass away with secondary things, not necessarily Parkinson’s disease, but for example, aspiration pneumonia, heart disease, regular old age. People pass away and never develop dementia. But yes, obviously most people, if they live long enough, will develop dementia. Far more common than previously thought is what’s known as mild cognitive impairment. Some people have called mild cognitive impairment (MCI) as an intermediate state between normal cognition and dementia. There are cases of mild cognitive impairment that are related to factors such as medications, depression, anxiety and so on. So, if you look at studies of Parkinson’s disease with MCI, probably over three-year period, somewhere between five and 10 percent of cases of MCI revert.

BrainWise: How should a person change their lives after receiving a diagnosis of Parkinson’s Disease?

Dr. Troster: One must start looking for new hobbies, new ways to express one’s creativity. I think it’s very important for people to remain socially engaged. People with Parkinson’s Disease sometimes tend to feel stigmatized or become embarrassed by these symptoms. You also see people with Parkinson’s often try to hide it by putting their hand in their pocket or they sit on their hand. Actor Michael J. Fox himself talked about how long he hid it, and I think it took him eight or nine years before he came out and told people that he had Parkinson’s disease.

I think things are less stigmatizing than they were in the past. I think some people’s reactions to mental health conditions often come from a poor understanding of what the condition is and sometimes a fear or a sense of threat that one may suffer a similar fate. But persons with Parkinson’s Disease are very adapt. We’ve looked at coping strategies. They use coping strategies just like healthy people. They’re quite capable of adapting to the disease, the diagnosis, of keeping on going. Many people with Parkinson’s disease continue to work, they continue to find pleasure in social activities.

I cannot overemphasize, quality of life can be very good in Parkinson’s disease for a long time, despite these changes. And I think people have to hear that.

BrainWise: Once someone is diagnosed with Parkinson’s Disease, is there a uniform course of symptoms?

Dr. Troster: Not really. Not everybody has cognitive impairment—again, look at Michael J. Fox. Cognitive impairment and MCI tend to be especially rare in young onset. Some patients also react differently to medications, develop dyskinesias, or erratic movements, in response to medications sooner, which is unusual. But there are alternative therapies available too, such as deep-brain stimulation.

BrainWise: What is deep-brain stimulation and how can it help?

Dr. Troster: Surgical treatment is usually way down in the armamentarium of treatments. It’s not the first thing one considers. It’s usually when people have side effects from medications or intolerable side effects from them, or the diseases become less responsive, some of the symptoms, or they have complications as they’re from the treatment like dyskinesias or they can’t tolerate doses of medication. Then it’s a good time to consider alternative therapies. Deep-brain stimulation (DBS) is one of those alternatives.

It’s been around 30 years now. The devices have become much smaller, much more sophisticated, so you can steer currents to very small parts of the brain and shape the electrical field with which you’re stimulating the brain. With DBS it becomes easier to control specific symptoms and avoid side effects with the therapy. These devices last [a relatively long time]. Some people choose to have devices with batteries in them that need to be replaced every few years. Some people prefer a rechargeable device, so they don’t have to worry about replacing a battery. Again, it’s not a first line therapy, but it’s a therapy down the road for people who have complications or an unusual course if they’re young and develop some of these symptoms early.

BrainWise: How does this treatment work?

Dr. Troster: It’s pretty much like a pacemaker. The treatment is ongoing, it’s continuous. The device needs to be programmed by a neurologist and the programming tends to take a little more time initially. You’ll have more visits with your neurologist immediately after surgery, probably every four weeks or every two months. Once it’s programmed, you’re probably going to see your neurologist just like every other patient, probably every six to 12 months. The therapeutic benefit lasts a long time. Typically, what people tell you is that the very best you are with medicine is probably the very best you’re going to be with the device. It evens out the effect, so you don’t have the fluctuations. If somebody’s got balance problems or gait disturbance because of balance problems, it’s not going to help for that. It’s not a therapy for everything. People ask whether a person with Parkinson’s disease a candidate for surgery, and I’ve always preferred to turn it the other way around and say, ‘Is this an appropriate therapy for the person with Parkinson’s disease?’

Patients also are very different in their risk tolerance. I’ve seen persons where they see the neurologist and the neurologist says, ‘Well, you’ll have some benefit from DBS.’ And the person says, ‘I don’t care. I want surgery anyway.’ In one example I’ll remember forever, a patient told me, ‘I don’t care. I’m retired. All I want to be able to do is tee up the golf ball.’ My response: ‘Well, who knows,’ sort of jokingly. ‘If it affects your memory, your golf score will get better too because you won’t remember the number of strokes you’ve taken.’

BrainWise: What does the future of Parkinson’s Disease treatment look like?

Dr. Troster: Let me get out the crystal ball here. There’s an amazing amount of research going on in therapies, in terms of molecular biology, genetics, gene therapy, medications, and identifying what causes some of the misfolding of protein. As you know, some advances have lately been made with medications for Alzheimer’s disease. Will there be a similar thing for Parkinson’s disease? One hopes so. I think ancillary therapies are going to continue to get better. [Researchers] have never looked at cognitive rehabilitation in Parkinson’s disease, but now there are people looking at that. [Researchers] also are looking at transcranial stimulation, be that direct current, alternating current or magnetic stimulation. And what’s exciting to some extent is there’s some findings from studies in Italy that suggest with [this treatment] you might make persons more receptive when you do cognitive rehabilitation.

[Other researchers] are trying to find biomarkers. I think that’s one of the things that’s going to be imperative. If we can find these biomarkers and put them together with other markers, we can predict what the course of the disease is going to be. Then we can determine what treatment needs to be given. I think in future, maybe five or 10 years from now, doctors are going to say, ‘We need to treat you fairly aggressively; this is going to be a progressive quick form of Parkinson’s,’ or, ‘This is going to be relatively benign. You’re going to develop this at that stage, and we’ll treat you at that time for this [one] symptom.’ So I think with treatment tailored for individual symptoms rather than trying to hit all symptoms with one drug or two drugs, that will be the way things go down the road.

BrainWise: Finally, Dr. Troster, what’s the next big research question for you?

Dr. Troster: The big question is, ‘Can we predict who’s going to develop dementia with Parkinson’s disease and how quickly?’ Because these are the folks we really want to spend more time on. We want to repair families, make these changes earlier, and hopefully predict these things sooner. And I’m not hopeful that our neuropsychological tests are necessarily the best for this right now. About 25 years ago, when I started focusing on this, a Parkinson’s Disease expert who will remain nameless said to me, ‘Why are you doing neuropsychology in Parkinson’s disease? It’s a movement disorder.’ That’s a big [hurdle to overcome.]

Non-motor symptoms are the big challenge in Parkinson’s Disease today. These are things that lead to caregiver burden. These are the things that lead to institutionalization, and loss of independence. I think we’ve made huge strides in the last 10 years. I think we also have a long way to go. We’ve come to realize a lot of what some of the issues are, whether they’re impulsive and compulsive behaviors that people can develop, cognitive changes, depression, anxiety, psychosis, other non-motor features, like some patients develop pain, sleep disturbances. How do we cope with those? How do we best treat those? And I think we’ve come to recognize them at least, and able to diagnose them a little better. Now what we have to do is get better treatments for these things.

Fox still educating, inspiring about Parkinson’s Disease

The actor who played Marty McFly in the “Back to the Future” trilogy is the face of a new film these days: A documentary about his own personal battle with Parkinson’s Disease.

Michael J. Fox, who rose to stardom in the 1980s as Alex P. Keaton in the TV show, “Family Ties,” was diagnosed with Parkinson’s at age 29, and has been an outspoken advocate for awareness and education ever since. Fox is now 61.

The documentary, titled, “Still,” debuted May 12 on Apple TV.

The movie, which incorporates documentary, archival and scripted elements, has received critical acclaim from media outlets such as NPR and The New York Times. It recounts Fox’s extraordinary story in his own words, and, as the film’s promotional copy explains, “explores what happens when an incurable optimist confronts an incurable disease.”

Fox made several public appearances in the weeks before the film’s debut, and spoke openly about his battle with Parkinson’s.

In an interview with Variety, Fox spoke about his day-to-day realities.

“I have aides around me quite a bit of the time in case I fall, and that lack of privacy is hard to deal with,” he said. “I lost family members, I lost my dog, I lost freedom, I lost health. I hesitate to use the term ‘depression,’ but all the signs were there.”

Fox revealed in the same interview that he has broken multiple bones over the years—usually the result of falling. He enumerated his broken bones for the author of the story: arm and elbow and face all were on the list. He went so far as to say falls related to balance issues are one of the biggest dangers of living with Parkinson’s Disease.

“My problem is I fall down. I trip over things and fall down and break things. And that’s part of having this,” Fox said. “But I hope that, and I feel that, I won’t break as many bones tomorrow. So that’s being optimistic.”

During the same week, in an interview with CBS Sunday Morning, Fox told interviewer Jane Pauley that his experience with Parkinson’s has gotten progressively more challenging.

“It’s been 30+ years; not many of us that have had this disease for 30 years,” he said. “I’m not gonna lie. It’s gettin’ tougher. Every day it’s tougher. It sucks having Parkinson’s. But, but that’s, that’s the way it is. I mean, you know, who do I see about that?”

Still, Fox has much to celebrate.

Dr. Alexander Troster, professor of neuropsychology and chair of the Department of Neuropsychology at Barrow Neurological Institute at Dignity Health St. Joseph’s Hospital and Medical Center in Phoenix, said Fox is a “great example” of showing that there can be life after a life-changing diagnosis.

“He’s one person, but if you look at the education, awareness, and research that has helped other people, the impact he’s had is amazing,” said Troster, a past president of the National Academy of Neuropsychology. “He’s made something very positive out of all of this.”

Troster went on to say that the Parkinson’s symptoms Fox exhibits currently are consistent with symptoms that someone who has had the disease that long might show.

“The symptoms are obviously progressing. He shows some of the treatment side effects,” Troster said. “It also shows that you can have a great quality of life for many, many years with the disease.”

Fox himself is hopeful for the future.

The Michael J. Fox Foundation has raised $1.5 billion for research overall, and this month announced a breakthrough: a biomarker for Parkinson’s which could mean faster diagnosis and treatment.

In the film, he also credits Parkinson’s with saving his life, and forcing him to make the most of every moment.

“The thing about motion with me is I’ve always been moving; I’ve always counted on movement to not only propel me from place to place, but to express myself,” he says in the film. “The thing that I learned was that I couldn’t be still in my life. I couldn’t be present in my life. Until I found this thing that made me present in every moment of my life. It’s shaken me awake.”